Kaelyn sick...

Little Kaelyn has a flu bug I think. She is not feeling well. Hopefully she will feel better soon. She has a clinic appointment next tuesday and a cholangiogram and tube change next thursday. So, next week will be busy. I will try and update after those two appointments to fill you all in.

Love to all,

Angie

Childhood Cancer Research budget cuts...

I need your help....

There have been recent federal budget cutbacks for childhood cancer research. "Rare tumors" is among those to get their budget cut. Hepatoblastoma fits into that category. Without funding and research kids will continue to die.

Please take 10 minutes to visit http://www.curesearch.org/news_and_media/news_article.aspx?id=4470

Read about the cuts, and the impact, and send a letter to your representatives and the president. You can do it right from that website.

After you do that, tell everyone you know to do the same.

Another link that might be interesting to view is this story from ABC. It blatantly states that rare childhood tumors is one of the programs that will have to make cuts. It just made me want to cry and yell at the Bush administration and tell them Kaelyn's story. Just copy and paste this in your browser to watch: http://abcnews.go.com/Video/playerIndex?id=2879611

This is vitally important to so many children and adults who are facing cancer. It is not right that people will die just because of budget cuts.

Thank you so much for taking the time to help save lives. Kaelyn's life is a direct result of what can come about from research and clinical trials. Life is too precious to disregard.

Love you all,

Angie

Thanksgiving photo...

So, this is a pic of Kaelyn at preschool on Thanksgiving....I though it was pretty cute!

We are all doing well right now! Hooray!

Angie

Home..

Kaelyn was discharged yesterday, yippee! We are home on two different antibiotics. I was going to keep her home from school today, but she was just so perky! So off to preschool we went. She had a great time. I can't believe how fast she recovers from these major incidents! Kids are amazing...

Love to all!

Angie

Biliary drain out...

Oh man, what a past 48 hours. Yesterday I came to Children's for Kaelyn's labs and clinic appointment. We dropped off her labs and were heading to the car to meet Wade for lunch to pass the few hours we had until her clinic appointment. I was taking her out of her stroller and noticed her tube was stuck on one of the clips in the stroller, so I unhooked it. I pulled her out of the stroller and set her in her carseat. I turned around to put the stroller away and on the seat was her biliary drain! I quickley turned back to Kaelyn and asked her frantically if she was alright, she said yeah mommy, it didn't hurt. It didn't hurt! I had accidentally pulled out an 18 inch long drain from her intestines and liver and she said it didn't hurt. I was relieved, but knew that back into the hospital we had to go. I called her transplant coordinator and she came and took a look at it and dressed it becuase if was a little leaky. She also called Dr. Horslen and he thought that it could wait until he looked at it in clinic in a couple of hours. So off we went to meet Wade, again, for lunch. During lunch Kaelyn started getting the chills and so we drove back into the hospital a little early. She got into clinic and was starting to fever. So we took blook cultures and she was admitted. The rest of the day was pretty frightening. Her blood pressure was low and her heart rate and temperature were high. She was given tylonal and a couple of boluses of fluids plus antibiotics. The nurses took her blood pressure every hour through the night and finally she started to stabilize. This morning she had an ultrasound to see how the bile ducts looked and to make sure there was not fluid collections anywhere. No fluid, but her ducts looked dialated. So back into IR to get a new drain placed. Luckily they old tract was still open so they were able to slip the new drain in fairly easily. And the end of the drama is, Kaelyn is doing much better sitting in her bed painting her fingers and hands with finger paints with a new drain in place. I felt really bad about the whole thing, but am really relieved that she is better now. Her cultures did come back positive this morning, so we will be in the hospital for a few more days. I am hoping that by Sunday we will be able to go home, but we will see.

Love to all!

Angie